I guess what always puzzles me is how surprised my oncologist is when I tell him about the rectal pain that I have. Am I really his only rectal cancer patient that experiences this?
I'm often surprised by the same thing. My current onc is just out of a fellowship, so he's still relatively new to this, and I can understand that he hasn't seen it all yet. But even some of the most experienced docs don't always seem to understand exactly what happens with us. I suspect it may be because there are lots of people who are embarrassed to ask about it, either because they don't want to talk about their bowel habits or because they don't want to "bother" the docs with questions.
I'm going to ask for a referral to the pain management clinic at MGH. I had a great experience with them when I had my leaking epidural and associated brutal headache. And yes, Liz is right - it's wonderful to have someone take your pain seriously. In the mean time, I do get some relief from hot baths, higher doses of ibuprofen, Calmoseptine, heating pads, etc. It's just that I have periodic episodes that are much, much worse, and I want to have something in my arsenal to deal with them.
Thanks for all these wonderful responses. It really does help to know that you guys understand the experience. My husband seems continually baffled by this, even though I've explained to him exactly what's going on. I think it's hard to imagine what this pain is like if you haven't experienced it. I'm not quite ready to consider a permanent ostomy yet, but I do need to find a way to change this pattern, I think.
Beth dx @age 42, Jan '11
RC, T2or3NxM0 (stage IIIA/IIIB)
6 wks chemorad Feb - Mar '11
LAR 5/23/11, staged T2N1bM0 (2 of 15 nodes positive)
8 rounds FOLFOX, June-Oct. 2011
clear scans Nov '11, May '12, Nov '12, May '13 http://www.mysemicolon.net